Prof. Arndt Rolfs has joined newly formed “The Global Commission to End the Diagnostic Odyssey for Children”, a dedicated group of technology innovators, patient advocates, healthcare providers and researchers. The commission works on a roadmap to speed up rare disease diagnosis in children to help affected families all around the world.
Its aim is to shorten the multi-year journey that patients and families endure before being diagnosed with a rare disease. On average, it takes 5 years before a rare disease patient, of which approximately half are children, receives the correct diagnosis.
The Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease was created in collaboration by the Shire, Microsoft and EURORDIS-Rare Diseases Europe, as a multi-disciplinary group of experts with the creativity, technological expertise and commitment required to make a major difference in the lives of millions of children and their families. The purpose of the Global Commission is to establish a roadmap for the rare disease field that focuses on solutions to core barriers preventing timely diagnosis for all rare diseases – with an emphasis on those affecting children. The Global Commission brings together representatives from multiple sectors to provide diverse perspectives on rare disease diagnostics.
Within its roadmap, the Global Commission will offer recommendations designed to address core barriers preventing timely diagnosis impacting all rare disease patients, of which approximately half are children, such as:
- Improving physicians’ ability to identify and diagnose patients with a rare disease in order to begin care and treatment
- Empowering patients and their families to have a more active role in their health care
- Providing high-level policy guidance to help achieve better health outcomes for rare disease patients
You can find more information on a commission website